Making the decision about future plans for care

 

 

  

 

   DISC

   Oxford Dementia Centre

   Institute of Public Care

   Roosevelt Drive

   Oxford OX3 7XR

   Tel: 0845 120 4048

 

   www.disc.org.uk

   email: info@disc.org.uk

 

 

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This fact sheet is designed to help carers who are thinking about whether now is the time to ask for more support from friends, family or community services, or whether it is time for the person you care for to move into a care home.

 

It looks at some of the feelings you may be experiencing: the first steps to take, how to think through the decisions, what alternatives may be available, and the process that you may need to follow.

 

You may also find the following fact sheets helpful:

 

·        What is dementia?

·        Finding out what help someone needs and who can provide it

·        Assessment and diagnosis

·        Treatment and therapy for people with dementia

·        Getting help through financial benefits

·        The process of choosing a care home

 

Thinking about the decision - Is now the time?

 

Many carers make statements like:

“I hadn’t really talked to anybody about how difficult it had all got”;

“I felt so guilty about not being able to manage”;

“I didn’t really know who to talk to”; and

“We live 50 miles away and didn’t really know what was going on”.

 

 

 

 

 

The following checklist is designed to help you make a realistic appraisal of your current caring situation.

 

Topic

Answer

 

Am I feeling continuously tired during the day and evening?

 

 

 

Do I feel resentful that I am not receiving more help with the person I care for?

 

 

 

Am I getting less sleep at night compared with how much sleep I used to have?

 

 

Do I feel I am not in control of my situation at the moment?

 

 

 

Am I often on the edge of loosing my temper or becoming tearful?

 

 

 

Am I finding it hard to carry on coping with the level of care I am currently providing?

 

 

 

Do I feel unable to carry on managing behaviours such as wandering, aggressive outbursts, shouting or continuous repetition of sentences and words?

 

 

 

 

If the answer is yes to three or more of the above questions then it may well be time to think about making changes.  This might not mean the person you care for moving into a care home but it may mean that you need to find more support at home.  Many people find this difficult to recognise or admit, and as a result, leave making decisions about care until they cannot cope any longer.  Consequently, the decision about what help you access can be rushed and hurried and may lead to inappropriate action.

 

Planning your next steps will be the first move towards making a positive decision:

 

Assessing the situation

 

Talking about the situation you are in with other people who have been through the same experience can be helpful.  This may be a local Carers’ Centre support group, Alzheimer’s Society or Relatives Association.  Be wary of talking to people who don’t know what your experience is like.  Some neighbours and relatives may have no idea what it is like to care for someone with dementia.  Some GP’s have had little contact with older people with dementia and will just say now is the time for residential care without knowing about other options.  Always try and balance the advice you receive with an honest appraisal of your feelings and capacities. 

 

It may be worth having an initial conversation with your local authority social services about an assessment and talking through alternatives that may be available such as providing more support.  The views and preferences of the person you care for should always be taken into account if this is possible.

 

 

Evaluating the alternatives

 

You may decide that more support at home is needed.  Some or all of the following services may be available:

 

·              Home based services such as someone to help the person you care for get up, washed and dressed and help to get to bed

·              Day Centres

·              Respite Care

·              Adaptations to the home

·              Equipment to help with daily tasks and activities

·              Claiming benefits that could lead to extra financial support

·              Meals on wheels or frozen foods

 

 

On the other hand you may come to the decision that it is time to make inquiries about care homes.  This does not mean the right time for a move is now but it helps to know what possible types of accommodation may be available now and in the future.

 

A care home placement can only be accessed if the person you care for has had an assessment of need from social services (unless the person you care for can totally fund the cost of a care home themselves).  If it has been decided through the assessment that a care home placement is the best option, you could start to find out more about what care homes are like.

 

Most of us have never been inside a care home and don’t know what to expect.  It is worth contacting homes directly to arrange a visit and ask if you can just "pop in" for a visit.  This way you can get a feel for what goes on in the home on an average day, rather than when visitors are expected.

 

 

We can:

 

·              Provide you with a list of registered care homes in your area

 

·              Put you in touch with your local authority social services

 

·              Provide you with a list of local and national organisations that can give you detailed information and advice on care homes

 

 

 

 

 

This fact sheet can be made available in large print.

 

We are constantly looking to improve our information.  It helps if you let us know whether the information in this fact sheet was/was not useful and if there are other fact sheets that you would have found helpful that we have not yet provided.

 

While the information contained in this fact sheet is believed to be correct, DISC does not accept liability for any error/s it may contain.